Spiritual Beliefs and End of Life Care

What role do spiritual beliefs play in a "good death"? How can the nurse in her/his role as patient advocate be equipped to assist the patient and family in honoring their spiritual beliefs when considering end of life treatment?

According to a study published this week in the journal of the American Medical Association, "cancer patients who rely on their faith to handle the stresses of serious illness and approaching death are more likely to receive aggressive care when they die".

In this study, nearly 80 percent of the 345 patients with advanced stages of various cancers said religion helped them cope, and about 32 percent reported that their faith was "the most important thing that keeps you going."

"Cancer patients who relied heavily on religious coping were less likely to understand a do-not-resuscitate order and felt that such an order was morally wrong. These patients were less likely to have advanced planning such as having a living will (29 percent, versus 68 percent who were less religious) or medical power of attorney, which is the ability to act on someone else's behalf (34 percent, versus 64 percent who relied less on religion)."

In interpreting the results, study lead author Andrea Phelps, MD says "beyond the significance of religious faith in coping with the emotional challenge of incurable cancer, it is important to recognize how religious coping factors into extremely difficult decisions confronting patients as their cancer progresses and death appears imminent. Beyond turning to doctors for advice, patients often look to god for guidance in these times of crisis."

Holly Prigerson, associate professor of psychiatry at Harvard Medical school says, "our results highlight how patients' ways of coping, particularly their use of religious coping, factor prominently into the ultimate medical care patients receive. This suggests that clinicians should be attentive to terminally ill patients' religious views as they discuss prognosis and treatment options with them. A greater understanding of the basis of patients' medical choices can go a long way toward achieving shared goals of care."

In the face of serious illness and/or impending death, a person's spiritual and religious beliefs will influence the choices and decisions regarding treatment.

During these times of health crisis, patients and families may not be sure what is ethical or appropriate. They may not have enough knowledge about their medical condition or understand the scope and meaning of the potential treatments. Nurses play a vital role in communicating with family, educating them and assisting them to make decisions that are congruent with their beliefs.

What are your experiences in dealing with spiritual issues during end of life care?

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This is really a deep subject and I'm sure there will be different thoughts and perspectives. My experiences have been different here in SC because there are so many different types of religions, churches, beliefs. The people who really live their faith accept that death comes to everyone, and that God makes that decision. People who have religion may not necessarily do more than go to church on Sunday and believe that they are good Christians simply because of that. I have had the pleasure of having several dying patients that were missionaries or reverands and really had a more difficult time accepting death than others did. So I don't think that we can generalize and say that patients who rely on their religion seek treatment more than not. There are some that accept death as an opportunity to go Home and be cancer free and out of pain, who seek quality rather than quantity. Others don't want to leave their families and friends even though it is inevitable. I'm sure that I am rambling as any older person tends to do at times, but I hope that this is clearer than mud. My Hospice peers told me that I should be the Chaplain but I'm the nurse until the end.

It makes sense who are we to say how people will react to facing death...even christians who know were they are going want to feel like they have accomplished what they needed to and some just simple want to know the loved ones they are leaving behind are going to be ok.

This is really a deep subject and I'm sure there will be different thoughts and perspectives. My experiences have been different here in SC because there are so many different types of religions, churches, beliefs. The people who really live their faith accept that death comes to everyone, and that God makes that decision. People who have religion may not necessarily do more than go to church on Sunday and believe that they are good Christians simply because of that. I have had the pleasure of having several dying patients that were missionaries or reverands and really had a more difficult time accepting death than others did. So I don't think that we can generalize and say that patients who rely on their religion seek treatment more than not. There are some that accept death as an opportunity to go Home and be cancer free and out of pain, who seek quality rather than quantity. Others don't want to leave their families and friends even though it is inevitable. I'm sure that I am rambling as any older person tends to do at times, but I hope that this is clearer than mud. My Hospice peers told me that I should be the Chaplain but I'm the nurse until the end.

Oh I whole-heartedly agree........we can't and shouldn't generalize. Everyone is unique with different needs, expectations, beliefs, backgrounds, etc. Those are the things we must take into account when making nursing assessments. It is not a "one size fits all" approach.

Since your peers say you should be the chaplain, I'm sure it is because they have witnessed the compassionate care you give to your patients.

Hi, I'm a new nurse only been practicing for about three months. I've experienced two deaths now. The first one I cried because no one was there and we had an aid stay with the resident. The second one the family stayed so I tried to give them their space. I wasn't sure really how to handle it. Also I wish I would have been told when a dying pt is ordered prn roxanol you give it regardless. But anyway after another dose of roxanol she was gone. I am wondering someone called it legal euthanasia is that what those orders for roxanol are? I felt like I was responsible for killing her even though I know she was actively dying and the roxanol was the family's request. I've been mulling over this for a few days and am no more close to finding any comfort. Can someone give me some perspective?

I can't really give you any technical comfort as I haven't even started my nursing Diploma yet but by the sounds of things I don't believe it was your fault. you said it yourself that she was dying regardless of whether or not you gave her the roxanol so don't blame yourself. Plus you have said that the family requested it. So don't let it get to you too much. I can completely understand how daunting that must have been especially when you haven't been practicing for very long but unfortunately it's just one of those things....we will no doubt see more deaths, be tempted to blame ourselves for other deaths and have to come to terms with how fragile life can be. But try and see it as a privelage to be able to be a part of comforting those families and being looked to by them for that comfort.
I'm babbling now I know but all I'm trying to say is don't let it eat away at you because otherwise it will stop you from wanting to do your job. And how about talking to a senior nurse to get some personal experienced advice. If they can get past those sorts of things then I'm sure you can too.
Hope I've been of some comfort.

I work in a religious community of catholic nuns. They understand well what a DNR is about. We are there to support whatever decisions that our patients make toward the end. I think that age also has a lot to do with their exceptance of the prognosis. I let them vent their worries and questions how they see fit and try to honor any last wishes that i am aware of at the end.

I have only been a nurse for 3 months myself and have been witness to several patients actively dieing. I had one that was on sublingual morphine prn. His bp was very low, respirations and pulse very high...he had mottleing on his knees and feet. I prepared the family before I gave the dose of morphine that we never know when his time will be, but we want to make sure that he is comfortable. The family understood and wanted me to go ahead and give the med. I would not give it unless there were obvious signs of pain/discomfort (increased resp. and increased pulse). I know that this is also part of the dieing process, but I don't want to take any chances that my patient is in pain. If it is time for the patient to die and the medication is ordered, you did not do anything to speed up the process....you made your patient comfortable in the end. Isn't that all we can ourselves ask for when our time comes?

Speaking of spiritual beliefs though...I always ask the families if they are Christian. If they are, I ask if they would like to pray over the patient before I give the morphine or if the patient looks like they have only a few hours. I don't know anything about any other religion, so I would not know how to help in that way, but if they would like for me to be there during their time, I certainly would. I had one pt's daughter that told me that she was a Christian, but hadn't been to church in a really long time, but she really wanted me to pray over the patient. Needless to say I did while holding the family's and pt's hands. (I really don't like to pray out loud, but God gave me the words.) She said that it was the most beautiful prayer she ever heard. We never know how we will touch those around us, especially in such an emotional time. Be supportive to whatever the family needs. If they need a nurse, be the nurse. If they need a shoulder, be the shoulder. If they need a prayer, ask God for help and just do it. You will never be sorry.

I think many of us have issues with the end of life dilemma. Often times we are being too agressive on people that really should be made comfortable. Where I work we get into many a debate about code status. Most recent, an 86 year old with metastatic cancer that told his family member he wanted to fight till the end even if it meant being coded and on a ventilator, I wonder if he really knew what he was talking about. Prior to admit his appetite declined and was having periods of increased lethargy. Albumin 1.2, so you know where all the fluid we gave him went. Kidneys failing, how far do we go, do we honor the wishes of that patient or do we say "sorry there really is nothing more to be done?" I read in a christian pamphlet once that when the body stops taking nourishment then it is time. Today one of my collegue physicians gave me a NE Journal of Medicine article "Is It Always Wrong to Perform Futile CPR" It was an article pertaining to the fact that even though we know a patient's outcome will not be good, we should go to extreme measures just to make the family feel at ease with the death knowing that "everything" possible was done. Thoughts?

As a nursing student in my junior year of a BSN program, I recently lost my mother after she fell and hit her head. There was a great deal of bleeding around and in her brain and by the time she reached the trauma center at a renowned hospital in our area, the damage was so extensive, there was little hope that things would end well. Yet, her doctors and nurses provided the most compassionate care to her, to my family, and to me; there was no doubt everything possible had been done to save her life. When they were able to determine, after several horrific days, that she would never get better, my family decided to remove life support and let my mother rest. They assured us in every way and in every conversation that they would medicate her, and that we could at least know that she would feel no pain and would not suffer, though they could not know, as is always the case with an unconscious patient, whether she would feel pain and my family was comforted in the certainty that she would not suffer anymore. What's more, one of the trauma surgeons who had been part of her emergency surgery, shared with me that she (the doctor) doesn't know if they give patients in that situation medication for them (the patients) or for the those who care for or the loved ones of those patients.

That's what giving the medication is about - erring on the side of caution. It's not about euthanasia; almost always the person is going to imminently die regardless. However, until some magic test is developed that proves without question that a person feels no pain, it's simply not compassionate or caring or humane to assume the person does not feel pain. If that assumption is wrong, the person will suffer greatly. In assuming that there is at least the possibility that the patient will feel pain, even if the assumption is wrong, no one is hurt by giving them the medication. It follows one of our basic ethical obligations as nurses, part of our oath just as it is for physicians, that first, we do no harm. The family wanted it, the physician ordered it, and you delivered it. Take comfort in that because it's honorable and it is a gift. I am sometimes surprised to find that those of us who go into medicine explicitly do everything in our power to care for the living, so often resist or taint our own attempts to do everything in our power to care for the dying.

It was a little surprising to read the findings that those with more religious leanings were found to be less accepting of death, even when it's inevitable. However, every person has a right as an individual human being, to decide what is best for them (or to have those who loved them most do so for them). In our attempts to care for the ill or the cognitively impaired (or the bereft and grieving loved ones of those for whom we care), we often try to shelter and protect them, and too often, we do so at the expense of stripping them of their power. We want to take their burden of deciding what they can handle and shoulder it for them, but the truth is, most people are well aware of what they can and cannot handle. I held my mother's hand and talked gently to her for almost two hours while her body fought its final battle, and I am forever indebted to the medical professionals who cared so compassionately for my mother and then allowed us to be part of her death, just as we were part of her life. It was the second wonderful gift they gave to us...the first was their tireless efforts to save her despite the near-certainty that she would not make it.

Your message touched my heart for you. I have over 15 years experience as a Hospice physician (Board certified). Your concern about morphine being "legal euthenasia" is a common concern. We all struggle at times in regards to "doing no harm" while giving our best to keep our patients comfortable.
I want to assure you that giving morphine prn to an actively dying patient is most definitely not "euthenasia" in any way, shape or form. PRN doses of opioids are usually ordered in a dose that is immediate release, short-acting and at insufficient dose levels to "hasten a death". The intent of the morphine is to alleviate the symptoms associated with the dying process. I have seen some patients who come to me actively dying with poorly controlled symptoms. Their uncontrolled pain causes them to produce increased adrenaline, which in turn can actually cause the patient to "linger". At this point, I will inform the families of this and let them know, that with their permission, we will give the patient a little bit of morphine to get the patient comfortable, and that once they get comfortable---that will allow them to "let go". It is not the medicine that is killing them--it is the underlying disease. We cannot change the final outcome--death; however, we can change the way it happens (ie, die comfortably, instead of die in pain).
There is another situation, but it is a rare event in the world of hospice: That is, the rare circumstance that the dying patient's symptoms are not being controlled despite trying numerous meds and doses. (This has happened to me only about 2-3 times in the last 15 years of treating thousands of dying patients.) In these cases, the physician must sit down with the family and discuss the options very carefully. With their informed consent, "terminal sedation" can be initiated which evokes the principle of "double effect". This means that although our intent is to control symptoms, another effect may be that the patient is rendered sedated enough to prevent even "sips" of fluids; thus, potentially hastening the end a little sooner. The Medical Boards and legal system has passed their ethical opinions that even this, is not "euthenasia", because---it legally goes to what is the "INTENT" of administering these meds. And the intent is to control symptoms--not kill--the patient. I don't like doing these cases. But I know that even in these cases, it is not "legal euthenasia". Your case and most cases most likely will never come close to being even a "terminal sedation" situation. And even if it does, a trained and experienced hospice physician will be carefully giving just enough medication to keep the patient's symptoms controlled and comfortable.
Keep up your good work. Your patients need you. Anytime you feel uncomfortable you should talk with the physician, who will hopefully explain his thoughts, orders and pharmacology of these type of meds to help reassure you. God Bless, "Homedoc"

I agree with you, but I respectfully disagree with my colleague and the article about "doing everything just to make the family think that you have done everything, even if it is futile".

It is ultimitely what the patient would want. If a patient wants "everything done" after being fully informed, then that certainly is the patient's right (autonomy). If the attending physician has fully explained the situation and prognosis to the patient and family, most of the time they will opt for comfort measures. There will always be a small percentage who want "everything" regardless. Unfortunately, I believe that my physician colleagues fail to prognosticate and communicate well to the patient and family. Prognostication is a lost art for physicians. We are not trained well in end of life care and don't feel comfortable talking about dying. We often feel like failures if we don't "cure" the patient. The Hippocratic Oath says that "our sole purpose in medicine is to cure.." I hope someday that we can change the "u" in "cure", to "a" for "care". (That's on my bucket list).